'Challenge the status quo': Q&A with Leigh Ann DiFusco, PhD, RN, Diversity Fellow

Leigh Ann DiFusco, PhD, RN, hopes to establish a robust, independent research program that promotes lifelong health and well-being for adolescents living with CHD.

Editor's Note: Diversity and inclusion are critical drivers to our breakthroughs at Children's Hospital of Philadelphia Research Institute. Fostering a community of scientists from unique backgrounds and academic experiences enables collaboration to meet challenging pediatric problems from a variety of perspectives. In a continuation of our Q&A series featuring scholars in the Postdoctoral Research Fellowship for Academic Diversity program at CHOP, we're featuring two new investigators who are inspired to drive change.

As a key part of CHOP's commitment to diversity, this fellowship funds talented researchers and educators from different backgrounds, races, ethnic groups, and other diverse populations. Join us to meet these fellows, learn more about their research interests, what diversity in science means to them, and how they enjoy spending their time outside of work. Our next featured Diversity Fellow is Leigh Ann DiFusco, PhD, RN, postdoctoral research fellow and clinical nurse specialist as well as an affiliate research scientist at our Center for Injury Research and Prevention.

What does diversity in research and science mean to you?

Diversity in research and science is critical to advancing knowledge effectively. When designing a research study, diversity among research samples is important to the accuracy of results and overall quality of studies.

When gender, race, ethnicity, socioeconomic class, and other demographic characteristics are underrepresented, findings may be less generalizable. These situations can contribute to research gaps, impact the efficacy of therapies that promote health and well-being, and create barriers to accessing healthcare. Additionally, diverse samples cultivate diverse and interesting results that often provide insight into future research and include concepts that might not have been revealed among a less diverse sample.

Diversity among scientists and within scientific communities is also important — and it encompasses more than just being inclusive and accepting of race, ethnicity, gender and/or ability. We must also embrace diverse perspectives, experiences, and points of view.

It may require someone to step outside of a comfort zone, reconsider stereotypical thoughts or navigate conflicting emotions. These conversations and experiences may feel uncomfortable, but they are necessary to challenge the status quo and cultivate environments for scientists to inspire and be inspired by others, and feel safe, supported, and valued.

Tell us about your background and what compelled you to apply for the Postdoctoral Research Fellowship for Academic Diversity.

I was born at 26 weeks gestation weighing in at 1.275 kg in the late 1970s. I spent my first weeks of life "feeding and growing" in the neonatal intensive care unit at CHOP. The impacts of my pre-term birth were unclear, and after beating the odds of survival, my parents and I started a journey down a path of long-term orthopedic care for most of my childhood.

Pursuing a career in nursing seemed logical. I wanted to give back to the healthcare community that cared for me and pay it forward to children and families in need of healthcare. A doctorate degree and career as a nurse scientist was not something that I had planned; rather, it evolved as I pursued clinical and leadership roles in adult and pediatric healthcare settings.

I grew up when frameworks for diversity, equity and inclusion were less robust, and spent much of my life trying to downplay my differences or prove myself in academic, social and employment sectors. Programs like this are an example of how diversity, equity and inclusion has shifted from actions that were tolerated and accepted to people and organizations becoming accountable for diverse representation.

I pursued the Postdoctoral Research Fellowship for Academic Diversity because I am committed to diversity in the biomedical sciences. It provides mentorship and financial support to further my research and prepare me for a clinical and/or academic career as a nurse scientist.

What inspired you to choose your research focus, and what do you aim to achieve with your research?

My personal experiences have enhanced my clinical expertise, helping to identify disparities among underrepresented groups, inform systematic improvements to nursing care, and shape the foundation of my research. My long-term career goal is to establish a robust, independent program of research as a nurse scientist that promotes lifelong health and well-being for adolescents living with a congenital heart defect (CHD). Research examining health behaviors among adolescents with CHD is limited, and I aim to address this gap.

My program of research evolved while caring for adolescent patients in the Cardiac Care Unit at CHOP. While preparing for discharge, adolescent patients were excited to return to their lives at home and in schools and communities; however, they were also aware that a CHD or cardiac condition could introduce certain challenges, especially if they were taking medications or supported by a medical device. They would ask questions about activities like getting a driver's license and going to parties with friends, and their impact on health and well-being.

What are some research projects that you're excited about?

I am preparing to disseminate findings from a qualitative interview study that I conducted in 2022-2023 describing perceived barriers and facilitators to safe independent driving among parent/teen dyads with CHD. Developmental differences, lack of driving experience, and unsafe driving may contribute to motor vehicle crashes among adolescents. A CHD diagnosis may exacerbate developmental differences and increase the risk of motor vehicle crashes, a leading cause of morbidity and mortality during adolescence.

Findings from this study have the potential to inform future research, clinical practice guidelines, and health policies aimed at promoting safe, independent driving experiences for adolescents with CHD.

I am also conducting a study using self-report surveys and computerized games to examine the association between risky health behaviors and impulsivity among adolescents with CHD. Engaging in risky health behaviors may exaggerate their disease-related complications and increase dysfunction in daily living, morbidity, and mortality.

This study will provide primary data characterizing the influential factors of risk-taking behaviors and impulsivity among a sample of adolescents with CHD that can inform focused research and clinical practice guidelines for promoting health and well-being across the lifespan.

What do you do for fun when you're not working?

I enjoy spending time with my family — my husband, two teenagers, and rescue pup, as well as my parents and other family members. We enjoy traveling, Philadelphia sports, and beach vacations together. My hobbies include daily fitness and walking (with the rescue pup), cooking, listening to music, attending concerts, and reading.